Researchers from Luxembourg, Germany, and the UK joined forces in the Horizon 2020 project CENTRE-PD to understand which questions scientists should tackle that have the highest priority for people with Parkinson’s disease (PD) and their healthcare providers. In addition to the 27 pre-existing research questions that were to rank, participants could also make their own suggestions and formulate their needs. Analysing the results of this survey, researchers gained insights into the different priorities of affected persons and healthcare professionals as well as the effects of socioeconomic differences on the prioritisation of the research questions.
Priority Setting Partnerships to bridge the gap between patients and research
To bring patients, healthcare professionals and clinicians closer together and to make research more meaningful to patients, so called Priority Setting Partnerships (PSPs) are formed between these groups. Usually, PSP groups start with collecting research uncertainties, turn them into research questions, rank those by a first survey to form a shortlist of questions (10 to 30) based on which the final priorities are set. Some years ago, similar efforts have been initiated by Parkinson’s UK. However, the CENTRE-PD project aims to study the prioritisation in more depth by including not only people with Parkinson’s but also their friends and family members and healthcare professionals. “Thanks to the joint efforts we were able to study the research priorities in an international setting with almost 900 participants from three European countries allowing geographical comparisons.”, says Prof Krüger, coordinator of the National Centre for Excellence in Research on Parkinson’s Disease (NCER-PD) and leader of the study in Luxembourg.
Among the identified priorities: physiotherapy and drug treatments
The top 26 research questions identified by Parkinson’s UK and one research question on speech difficulties formed the 27 pre-existing questions of the CENTRE-PD survey. In addition, researchers analysed the free-text questions thematically by associating each with maximum four themes (e.g., ‘gut microbiota’) and then transformed the ten most recurring themes into research questions.
In Luxembourg the survey was sent to more than 1600 participants of the Luxembourg Parkinson’s Study. People with Parkinson’s were invited to share the survey with friends and family. Additionally, about 700 healthcare professionals were invited to complete the online version. Luxembourg had the highest participation of healthcare professionals and family members or friends. In Luxembourg, the participation of healthcare providers and family/friends was the highest compared to the other countries.
The results show that two research questions were among the top priorities in all three countries: improving muscle strength and balance (using physiotherapy) and drug treatments adapted to the different stages of the disease. The vast majority of the top 10 priorities (70-80%) were the same in all three countries, although the ranking within them varied slightly. For example, Luxembourg chose "What treatments are helpful for reducing balance problems and falls?" as the top priority, while participants in Germany and the UK wanted research to focus more on physiotherapy.
Socio-economic factors play a role for the prioritisation
The priorities of the study participants also changed slightly depending on socio-economic factors. To answer the question of whether socio-economic factors influence the priorities of people with Parkinson's, the researchers looked at factors such as education level, economic status and living arrangements. For less educated study participants, the topics included reducing stress and anxiety, treating dyskinesias (involuntary movements that are a side effect of some medications), and monitoring the success of treatment. "Depression and anxiety are generally more prevalent in people with lower levels of education, which could explain why this topic is more important for the study group with lower levels of education," says Anne-Marie Hanff, doctoral researcher, and main author of the study in Luxembourg "In addition, a frequently recurring theme of the free text suggestions also referred to depression/low mood in Parkinson's, which shows the importance of this topic."
Another high ranked question from the free text suggestions is "How can Parkinson's be identified earlier?". This question is already the focus of research in Luxembourg: the new "Healthy Ageing" study (www.heba.lu), recently launched in the country and in the Greater Region, aims to investigate methods for early detection of neurodegenerative disorders. An online survey is currently underway and is still open to new participants.
Healthcare professionals prioritise other questions than people with Parkinson’s
The CENTRE-PD study also found that priorities differed between patients and healthcare providers. The latter listed issues related to balance problems and falls and reducing tremor as the top two priorities, and also listed freezing of gate and swallowing difficulties among the top ten issues. All of these symptoms have an impact on the patient's safety, which may explain why healthcare professionals gave them the highest importance. The clear differences in prioritisation between people with Parkinson's and healthcare professionals demonstrate the importance of involving patients in Priority Setting Partnerships and in the development of research projects and policies.
"The closer the clinical researchers work with people with Parkinson’s, the more impact the research results will have. Ideally, patients can give feedback directly to researchers, translating research in a continuous loop from bench to bedside," says Anne-Marie Hanff. "It is important to hear the most substantial difficulties that patients face to conduct targeted research to improve patients' lives." To address one of the top priorities (physiotherapy), physiotherapists from the ParkinsonNet network are specifically trained to treat people with Parkinson’s.
Reference: Francesca Bowring et al. (2022). Exploration of whether socioeconomic factors affect the results of priority setting partnerships: updating the top 10 research priorities for the management of Parkinson’s in an international setting. BMJ open, 12(6), e049530. https://doi.org/10.1136%2Fbmjopen-2021-049530